BOB JK My diary of kidney cancer (to be continued)
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Hi, My name is Bob and I live in Cambridgeshire. I am married with an 8 yr old daughter and three older step sons. Up untill the end of last year everything was tickety boo having recently moved to a new house which we love. Work was busy but enjoyable. I am Manager of an electrical companys maintenance department and my Wife, Linda was enjoying her job as a Nurse. The three boys are buying there own house nearby and all work locally. In November I went to my Doctors with a small "cyst" on my chest. After a couple of referals and many Xrays, pet scans, bone scans and CT scans I was told the news everybody dreads. My lump on the chest was a secondary cancer of which the primary was in my left Kidney. I was fast tracked to the Royal Brompton, under the expert care of Mr Laddas who informed a long and complicated operation would need to be carried out to remove the bone tumor and surrounding bone which involved two ribs,my collar bone and chest bone. I did not have time to panic, the operation was carried out the next day over 10 hrs. After nearly two weeks in the Brompton I am recovering well from this op but I have since been told that the Cancer is in both kidneys as well as small mets in both lungs. It seems at the moment further ops are out the question and i have been put on the drug Sutent. I am one week into this and so far so good. I do not know what the future holds but I have to remain positive.
well after another good nights sleep I managed to do my four hours at work and it went pretty good. I actually felt very apprehensive as I walked into the office, but once there I was fine. Everybody seemed so glad to see me and it was good to get back into the fold. I am back there tomorrow for another stint so hopefully another good day in store.
Just a suggestion for you to think about ... if you have any work which you can bring home with you ... ask your employer if you can do that. Maybe it's not possible with what you do in your job, but maybe it is an 'adjustment' that your employer could make for you as often when you work from home you can do a bit, have a rest, do a bit more.
Thanks for the suggestion Karen. Not really an option in my job at moment but who knows.
Today Ive been back at work after another good nights sleep. As we had a bit of a flood whilst I was off work Ive spent most of the day chucking away old papers and other rubbish. im nearing the end of week three of the fifth cycle of Sutent and considering my 2 shifts back at work I really do feel pretty good. Tomorrow no work so hopefully I can relax a bit.
Well today ive had my relaxation, tomorrow I am hoping to try and start decorating Kates bedroom. The Sutent has today turned me bright yellow so I should contrast well with the mauve paint in kates room. My appertite is OKish at the moment and I seem to have got through my rough patch on Suternt quicker than normal. Today I have been horrified reading about the decision of "NICE" on Sutent. They are giving the general public the impression that Sutent will only prolonge life for 6 monthe where as a lot of us know this is not the case. Sutent gives people hope and in my case as i am sure in others Tumor reduction and then surgery. I am thinking of doing some sort of press artical on my case to show the general public the real benefits of Sutent. What do you think? Can it make a difference. I feel I owe it to all of you out there struggling to get Sutent to try and do something. I hope you all have a good weekend
As its now been a week since returning from my holidays and I have some energy levels returning I thought I would give you a general update.
The holiday went really well and for the most of it I felt really good. The first week was definately the best with both my appertite and energy levels being good. As that was week one of the fifth cycle of Sutent I suppose it was always going to be the best week. In that first week we docked at many ports and walked and toured many places. The food on the ship was great. Service was also very good, they could never do enough for you. The sea travel itself was very smooth, in fact you forgot you were at sea unless you went to the balcony or on deck. There was plenty for Kate to do on board and she made many new friends. During the second week my tiredness began to kick in and by the end ofthe second week my appertite was also failing, but given that we had eaten so well on the first week i dont think it would have mqattered if I had not eaten for another month. By the time it came to leave the ship I was ready for home. Whist I was on holiday I made the decision to return to work part time. I started that this week and went in for two half days. As I feel a bit walloped today I guess I am paying for those two days but I need something else to focus on. I plan to do the same next week and hopefully every week until I go in for my next operation. I start the last week of my Sutent on Monday and then the following Monday I return to the Marsden for further scans plus discussions with the surgeon and my Oncologist to Hopefully plan in the next phase of my treatment. At this stage we know that both tumors have shrunk from their origional size and that one of the tumors has began to die. At the next meeting they will decide weather to remove just the worst tumor or all of the Kidney. Thisn weekend I plan to do a bit of light decorating in Kates bedroom. Tonight I am also going to a wedding reception which will be good. Ive just looked out the window and I think rain is likely so I am off to cut the front lawn.
Just a point to raise about the NICE decision on Sutent. Was wondering if you saw the post by "Downunder" on the "Have you say : improve cancer care" section in left hand column. There is all the documents linked, together with comments made by patients, consultants etc. Maybe you would want to add some of your own. Sorry if you already know all about this. Others here anyway might read it - as I don't think so many people look at that section. If you read my profile you will see how my mother is affected. She is just starting Sutent, after having waited since last November for the PCT to agree, so I keep a close eye on how it affects people.
Like downunder I urge everyone to make your voice heard. by following the link http://www.nice.org.uk/ It is obscene that this decision is being taken by "NICE" Any extention to life is well worth the cost and during that extention other options could become available. During my "extention" my tumors have shrunk and an operation is now on the cards which would not have happened without the Sutent. Thanks Ann
Hi Bob and others I am on Kate Spall's mailing list - she is the campaigner who hasd been very successful supporting people doing battle with their PCTs. This is an extract of what she sent in one mailing "Hello all, I have included a lot of new names on the email - there are a number of people who may want to support our campaign to overturn the negative NICE decision for these vital kidney cancer drugs. If any new names wish to be taken off the list or if any of you have names you wish to add to the list just let me know. We have until the 29th August to "consult" with NICE to overturn this decision so let's make every day count." Her e-mail address is katespall@btinternet.com
I, like all others affected, am outraged at the recommendation and spin put out by NICE. Best wishes and keep fighting Ange
